Coping With Your Feelings

Since your child was diagnosed, your life has changed. A transplant brings changes to your home life, including new stresses. Every family is unique. Your family may feel fear, anger, depression and guilt. By sharing these feelings, you may find it easier to cope with change. Your child's healthcare team is here to listen to your concerns and help you in any way they can.

Fear

The time of diagnosis is often the hardest. Fear of the unknown may be overwhelming. This may be the first time your child has been in the hospital. This can be stressful to you and your child. You may also have fears about treatment, costs or how to help your child cope with a transplant. Talk about these fears and get them out in the open.

Anger

You may feel very angry. Feeling angry is a normal reaction. Find a way to express your anger. Talk with family, friends, a chaplain, or your chid's healthcare team. Participate in a physicial activity to release the energy.

Guilt

Parents may feel guilty because they did not know their child was sick. Families have said they wonder if they caused their child's heart failure. Other family members may feel guilty that they are healthy. Young children often believe they have "magical thinking" and may feel that they caused the illness. Let your family know they did not cause your child's heart failure.

Depression or Grief

Depression is used to describe a range of emotions and behaviors. Feeling sad is a normal reaction, which may cause changes in family routine and feelings of being alone. Change can cause grief and depression. Common symptoms are:

• Crying spells
• Decreased or increased eating
• Lack of interest
• Decreased energy
• Tightness in the chest
• Headaches

All these feelings are common human emotions. You are not alone. With the support of family, friends and your child's healthcare team, most families are able to work through these emotions. They are able to regain coping skills needed to meet care demands.

Suggestions to help cope with your child's illness:

• Find a private time to talk with your spouse or a close friend. Try not to talk only about your sick child.
• Avoid talking about your child in his presence, unless he is included.
• Find ways to reduce stress. You know what works best for you. Ideas include exercising or reading.
• Take turns with your spouse or another person who can stay with your child in the hospital or go to clinic visits. This helps everyone be involved with your child's treatment. It also reduces the gap that may grow between parents when one is more involved in treatment than the other.
• Ask a member of your child's healthcare team for help and support.
• Talk with other parents of children with transplants.
• Talk with your spiritual leader.
• Attend a support group.

Sometimes emotions become so overwhelming that it can be hard to regain balance. This is very true when there were stresses before diagnosis. If there have been other family strains or losses, mental health problems or substance abuse, counseling and medicine may be needed. Discuss your feelings with the healthcare team to get the help that you need.

What is the Impact of a Transplant on a Marriage?

An illness can upset a family's life. You may become emotionally and physically tired. Parents often continue to work while trying to keep a normal home routine. Many couples feel the strain on their marriage. They feel angry and upset and do not have time for each other.

Suggestions that can help include:

• Assess your coping styles. It is important to know and accept how your spouse deals with stress. Each person shows feelings in different ways. Some people withdraw, others cry or get angry, some try to learn as much as possible.
• Talk to each other. The key to a good relationship is talking. The need to discuss feelings, fears and information is even more important in times of stress. Silence can make you feel distant from your partner. Sharing feelings and facts can help. This will help you make decisions.
• Change roles when needed. The stress of an illness can change the roles of family members:
  • The mother who once took care of the home may now be too busy.
  • Another family member may need to help out in the home.
  • The father may have made decisions in the past. Now the mother is with the sick child and may be the one who helps make decisions with the healthcare team.

Changes in roles can cause stress in a marriage or a family. Some short-term role changes may be needed to help the ill child. Other changes may be long-term if they help the family work together.

What are Suggestions for Divorced Parents?

While divorce is hard on most families, problems can get worse when your child is ill. Your child may use his illness to bring divorced parents closer. In other cases, he may play parents against each other to feel in control. Do not let divorce affect your child's care. You are still a parent and good communication is key. Tips to help avoid problems:

• Talk with a member of the healthcare team if your child is having behavior problems.
• Provide copies of divorce decrees, custody and visitation rights for your child's medical record.
• Meet together with your child's healthcare team to help avoid confusion about his plan of care.
• Ask for two copies of all teaching materials so both parents have the same information.

How Does a Transplant Affect Siblings?

Siblings (brothers and sisters) also have feelings about your child's heart disease. They may feel upset, scared and unsure of what will happen. Children of any age will sense a change in their family life. Other children may feel resentment or anger. Mom and dad are spending time with the sick child. Siblings may have problems of their own, such as depression, trouble sleeping, physical complaints or school problems.

How to help siblings:

• It is normal to spend more time with your sick child. Set aside time to spend with other children.
• Tell them you love them and they are special.
• Talk about the transplant so they understand. Help them learn about the illness and how it affects their brother or sister. Tell them heart disease is not contagious and they are not to blame.
• Take them to the hospital. Help them feel involved in the care of your sick child. This may help decrease fears and help them feel close to their brother or sister.
• Ask a friend or relative to stay in your home, rather than send your children elsewhere.
• Ask your children to help with chores. This makes them feel needed.
• Talk with their teachers. Teachers can support your children and let you know about any problems at school.
• Ask for help from a member of the healthcare team such as a child life specialist, social worker or child psychologist.

How Does a Transplant Affect Grandparents?

Grandparents have many responses when they hear their grandchild has heart disease. They may feel shock and disbelief or feel guilty for living a long life. They may also feel blame, thinking they passed heart disease through the family. Grandparents may also feel sadness, not just for their grandchild, but also for their son or daughter. Include grandparents in meetings with the healthcare team. This can help them understand the treatment plan.

Grandparents can be a great help to you. If they are still in good health, they can:

• Relieve you in the hospital or help at home
• Give your other children attention, comfort and love
• Serve as a contact person, giving others information, so you don't have to spend as much time on the phone

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